Entries in HAWMC
(34)

I write about and share my story of living with Lupus because I feel that "sharing is caring" and I strongly believe that Lupus Awareness is Fun! I share that "Lupus Awareness is Fun!" because Lupus Awareness is important. By putting Lupus Awareness in a postive light and sharing that it can be fun I hope to shine a spotlight on the facts and resources that are currently available to Lupus patients. I want to help raise Lupus Awareness because it is important. By sharing (and proving by example) that "Lupus Awareness is Fun!" my aspirational goal is to help the Lupus community; in reality when I write, tell my story and share my journey I am helping myself, if I can help others along the way - that is a bonus!

Every Lupus patient is unique and has a different perspective of what living with Lupus is like for them. My Lupus journey may be (and probably is) unlike another Lupus patient, but my hope is that some of the strength I find in sharing my story can reach beyond words on the computer screen. I write about my health focus because when I was first diagnosed almost 30 years ago, there was little information available to Lupus patients. I write about Lupus because if I can share that there is hope after diagnosis, I will. I write about Lupus because there is a chance (a small chance but a chance...) that my story of living with Lupus can help a new "Lupie" (Lupus patient) realize that it is possible to live a full and joyful life despite being diagnosed with a chronic autoimmune illness, with a funny name. I write about Lupus because if I can demonstrate by reflection that "Lupus Awareness is Fun!" perhaps I can impact the way Lupus patients are perceived in the world.

*This post is apart of my contribution to the 2012 WEGO Health #HAWMC Health Activist Writer's Month Challenge. The prompt for today is "I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping."

Living with a chronic illness, in my case Lupus, can make anyone (okay, me) feel anything but super. Sometimes, it takes all the power in my body to simply get out of bed and face what lies ahead. As I have mentioned before in my blog posts, to me there is a transformative power of "LA Lupus Lady" the persona, I created to help share that "Lupus Awareness is Fun!" The persona has also provided me with a sense of strength, courage and (to some degree) - power!

Thanks to Marvel (the comic company) and the "Create a SuperHero" section of the Marvel website now you can "Create Your Own SuperHero" so when I saw the prompt for today's #HAWMC writing assignment, I knew that I had the perfect opportunity to try http://marvel.com/games/play/31/create_your_own_superhero for myself.

This is how "LA Lupus Lady" would look if she was a "Marvelized" and became a real comic book hero. (This is not how I look when I don my purple cape and boots, but a girl can dream and a "LA Lupus Lady" can fantasize...)

Today's WEGO Health #HAWMC (Health Activist Writer's Month Challenge) prompt is "Superpower Day". If you had a superpower - what would it be? How would you use it?" After pondering, a few of the classic Superpowers such as: telepathy, superstrength, or weather control. I finally decided that I would not want to be telepathic. It is hard enough, dealing with my own thoughts (living with Lupus, it is not unusual to catch myself running thoughts over and over in my mind), why would I choose to be able to read the mind's of others? How does Professor X deal with it? Often, the weakness of Lupus seems overhwelming and the idea of possessing superstrength pleased me until I realized that there is more to conquering Lupus than harnessing strength, even superstrength. If like the character Storm, I had the ability to control the weather I would be able to alleviate most of the joint inflammation and subsequent pain that occurs when the weather changes, but is that a power I desire, I would not want to mess with Mother Nature.

After much thought, as it turns out I would not select any of those superpowers. I would choose the power of Invulernability because like Superman, as a person living with chronic illness and an autoimmune disease I would not (and could not) pass up the chance to experience the (super) power of having control over my own body. While it may seem like a passive superpower, I revel in the thought of selecting a "power" where the power lies in the ability to simply not be harmed, as "LA Lupus Lady" I would hope to share the power of Invulnerabilty with all who suffer from chronic disease. Lupus is a power player of an illness, it seems to take control whenever it wants. Usually Lupus takes control of my body at the most inconvenient times and places. Invulnerabilty would give me the opportunity to be in control of a life (my own!), being a woman with Lupus, I often feel like I have no control. To me, the power of being invulnerable isn't about not being harmed by anything, rather the power lies in the ability to feel safe. To have a sense of safety, that I control would be truly powerful.

This post is part of my 2012 WEGO Health #HAWMC Health Activist Writer's Month Challenge. Today's prompt ~ Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

The quote/affirmation that inspires me comes from Shakti Gawain. "Everything is unfolding perfectly." The simple and complex statement is a favorite quotation of mine. What touches me most about this quote is the idea that when there seems to be no logic or sense to what is happening in my life, no matter what happens, there is a plan and the journey is one to be enjoyed.

When I was first diagnosed with Lupus, it was Louise Hay's "You Can Heal Your Life" that helped me realize that attitude plays an important and vital part in the path of your life, in my case the path is living with Lupus. I find it incredibly powerful to know that Louise Hay is online and still active in the Wellness community. Find Louise at http://www.louisehay.com/ and on Twitter @LouiseHay.

As a student at San Francisco State University, I "found" (or discovered) the work of Shakti Gawain! Her book, "Creative Visualization" is (and has been for over 25 years) an international best seller. It was while reading Shakti's book "Living in the Light" that I recognized the power of intention and positive self-talk would be essential tools in helping me create my life with Lupus. "Everything is unfolding perfectly." The quote captures the prospect of optimism that despite the bumps along the road of life, in the long run we have the power to create and control the life we want.

It was a magical day when I stopped into The Booksmith on Haight Street in San Francisco and found "Reflections in the Light" Shakti Gawain's book of affirmations. Each day of the year has a "thought for the day" and affirmation to help guide the reader towards the joy that is right in front of them. I, for one, often find myself needing the gentle reminder (or "nudge") that Shakti's words provide. Whether it is "Everything is unfolding perfectly." or another of Shakti's inspiring statements of empowerment, I find comfort, hope and strength from the pages of her books.

If you are inspired by the quote and want to discover more about Shakti's work, I suggest you explore her website http://www.shaktigawain.com/ and follow her on Twitter @ShaktiGawainOne ~ I wish you well and hope that you realize no matter how difficult the circumstances may seem, that "Everything is Unfolding Perfectly."

Welcome to my time capsule blog post and my first for WEGO Health's 2012 #HAWMC Health Activist Writer's Month Challenge. The writer's prompt for today is "Health Time Capsule: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?"

I had a lot if issues working with the idea of a "health time capsule" and when I finally got down to writing it, there was a technical issue (aka: "Lupus Fog") that prevented me from saving the draft. So here I am pressing on, and I am going to make the best of it. As a Health Activist/Writer, I know that is what I am supposed to do. As a woman living with Lupus, it is the last thing that I want to do.

A time capsule of my health focus: my health focus is sharing my story of how I not only live with, but strive to thrive with Lupus. How do I make a time capsule about that-- especially when I am not sure of what kind of technology will survive for 100 years. There it is. The reason why I had/have/am having trouble writing this post: the word survive and the thought of survival. Since my diagnosis with Systemic Lupus Erythematosus over 28 years ago, each birthday is a true celebration of life but sometimes I nelgect to see that each day is one of survival.

Back to what I would put into my time capsule...

First and foremost, I would include the link to the WEGO Health Website http://www.wegohealth.com/ and WEGO Health Facebook page https://www.facebook.com/wegohealth. It is beacuse of WEGO Health that I am writing this now-- contemplating my issues with the word "survive" and "survival". Thank you so much! I should send Susan Mees and Marie Connelly personal notes expressing my gratitude.

Back to focusing on Lupus Awareness and Wellness. The next items I would place into my Health Time Capsule are from the Alliance for Lupus Research. The Alliance for Lupus Research (ALR) is the only Lupus organization whose Board of Directors fund all adminstrative and fundraising costs so that 100% of all donations made to the ALR go directly to fund Lupus Research.

The ALR reaches out to the Lupus community on Facebook at https://www.facebook.com/allianceforlupusresearch and if you tweet, follow them on Twitter @Alliance4Lupus. They use the #GetInOnIt, so use the hashtag when you tweet about Lupus. No one knows what the future of Lupus Research looks like, but with the continued growth of the ALR I feel that we are one step closer to finding a cure and discovering better treatments for those living with Lupus. The Alliance for Lupus Research website is http://www.lupusresearch.org/

I realize that the time capsule may not be opened for 100 years but if you want to join me in sharing "Lupus Awareness is Fun!" please join me as I walk with the Alliance for Lupus Research. I will be joining the Alliance for Lupus Research "Walk with Us" three times this year. My first walk will be May 12th in New Jersey at the home of the New York Jets, MetLife Stadium! Please support me or join my team if you live in the Tri-State area: you too can share that "Lupus Awareness is Fun!" http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign/1650187253?team_id=68701&pg=team&fr_id=2870

When I write about Lupus and what is going on in my life it can be found online at my website http://lalupuslady.com/. Though "LA Lupus Lady"is much more than a screen name, it has become a persona that helps me. When I don't want to face the thought of the painful day ahead, I think to myself "What would LA Lupus Lady do?" -- which provides me the strength to move forward and press on. I would include my stories in the time capsule so that perhaps future Health Activists will be able to learn from the thoughts and musings of an ordinary woman living with extraordinary circumstances. Living with Lupus, or any chronic disease, is an extraordinary adventure and when I remember to find the joys and beauty of life, I know that "life with Lupus is not easy, but it is better than the alternative."

That is what brings me back to my issues with the word "survive" and "survival". The first Lupus support group I was in did not focus on living with Lupus-- the focus on the future included medical directives and planning your own funeral. I realize now that Lupus is not the Holocaust, yet like many Holocaust survivors who wondered "Why me? Why did I survive?", I had those same thoughts. One by one, members of the Lupus Support Group stopped coming due to dwindling health. Something happened and my mother's cousin, Jerry Jampolsky, who created and leads the Center for Attitudinal Healing http://www.ahinternational.org/, and my mother encouraged me to stop dwelling on what could happen and focus on what is happening. With that, a shift occured and I began to manage life within the parameters of my new normal. Life as a Lupus patient. Later, I would become a Lupus patient and advocate and soon after that I became a Lupus warrior and activist and I tranformed-- becoming "LA Lupus Lady" somewhere along the journey.

I focus on and (start singing now, if you want) "accentuate(ing) the positive and eliminate(ing) the negative." Walking with the team "Chronically Awesome" for the Lupus Foundation of America is a way that I do just that. Friends that I met online have become friends offline. Connect with the LFA via http://www.lupus.org/newsite/index.html

While the ALR and LFA celebrates Lupus Awareness with (the color) Purple, the Lupus Research Institue has embraced the color Orange and the Orange Loop has come to symbolize the work of the LRI http://lupusresearchinstitute.org/ and the SLE Lupus Foundation http://www.lupusny.org/ and their support of innovative Lupus Research. I would include information and resources pertaining current resources and help now available to Lupus patients in my Health Time Capsule in the hopes that they are relics when the time capsule is opened on April 1, 2112!